A lupus doctor's perspective
by Meenakshi Jolly, MD
Lupus can be a life-changing experience. It can affect not only your physical and emotional health, but also your personal, social, professional and economic health. The way your lupus or its treatment affects your daily life may be known only to you. It is therefore important to recognize and communicate the effects of the disease or its treatment to your doctors. This enables them to give you the appropriate care you.
Frequently, patients with lupus and their families find it difficult to communicate with their doctors. This could be for a number of reasons:
- Your time with your doctor is limited and you may not be able to fit all your concerns in during the time you have
- You may sometimes forget to mention or may not know the best way to communicate these issues
- You may be uncomfortable bringing some of them to your doctor's attention
- You may feel that though these are bothersome issues, they either are not the highest priority items — or you may think your doctor knows about them already
If doctors were able to communicate the expected benefits and harms of any proposed treatments for lupus to the patients in a patient-friendly and easily relatable language, it might help patients take an active role in their own management and decision making — and thus take charge of their lupus.
Learning the Patient's Language
As a doctor myself who provides care for lupus patients, I understand the value of learning my patients' language. I have worked closely with lupus patients to learn various ways in which lupus or its treatment affects their daily lives using rigorous scientific research methods. The goal is to improve two-way communication within the context of a routine doctor visit, where limited time is available.
This work, conducted over more than a decade, has resulted in the development of these survey tools:
- LupusPRO (PRO stands for "patient-reported outcomes")
- Lupus Impact Tracker (LIT)
- Body Image Lupus Screen (BILS)
These tools have been studied widely not only in the United States, but also in many other countries and in various languages. These are the only such tools developed in the U.S. using insights from people with lupus, men and women, of varied ethnic and racial backgrounds. This work has has been published in various scientific journals and presented at numerous national and international conferences.
How to Use the Surveys
You may use these surveys to follow your disease and treatment with your doctor, as well as to communicate your concerns to them.